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Patient and Family Participation in Clinical Guidelines Development: The CF Foundation Experience
Sarah E. Hempstead;
Kelsey Fredkin;
Cade Hovater;
Edward T. Naureckas
ABSTRACT
Patient and family participation in guideline development is not standardized, or uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has been incorporating patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that incorporating individuals with cystic fibrosis (CF) and their family members on guidelines committees has provided insight otherwise invisible to the clinicians.
Citation
Please cite as:
Hempstead SE, Fredkin K, Hovater C, Naureckas ET
Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience